Wow, it’s amazing to find all of you here I can’t believe that there are so many out there with CH.  
My name is Christi, I'm 30 years old, married with 2 kids (girl 9, boy 3) and I was just diagnosed last week, so yes I am very new to all of this, so please bear with me.  My doctor put me on a prednisone pack and Topamax 25mg and I go back on Monday to up the dose of the Topamax.  I have the “shadows” as I am seeing them referred to here, but I have not been hit with anything higher than a 7-8 since starting the new Rx.   I need to get an abortive at my next appointment, as I am reading many of your stories.   (Does anyone else get the spacey feeling while on the Topamax?  It’s crazy, and getting old really fast, especially when I quit talking in mid sentence and the other person looks at me like I’ve totally lost it.  Thankfully that’s only been my husband so far.)
I have had "migraines" off and on since I was 16 but they come few and far between most of the time, and I would get hit 2-3 times a month and then nothing but I’ve always been one to just have a headache that lingers for a few days, vanish, return as a migraine a week or so later, linger a few days and then vanish again.  I have been reading over the site for the past couple of days and I can relate to so many of you.  
I feel so alone in all of this, no one truly understands, not even my husband and he has seen me raging thru an 8-9 in the middle of the night a time or two over the past year or so, just thinking it was a bad migraine.   The past few years have not been very bad for me CH wise, I was more focused on my female issues and any “headaches” I had I just dealt with while taking painkillers for other things going on with my system… in 07 I had a partial hysterectomy, as a result of that I got a staph infection nice long stay at the hospital and almost died.  After all of that was over I focused on work, family, more work, then in August of 08 I went in again to finish my hysterectomy, (at least that’s all over).  I finally got my HRT leveled out and feel normal on that aspect of life.  
I started this CH phase mid March in what I thought was a sinus headache, and was treated for sinus infection, but yet it never went away, so I finally went back to the doctor because it is driving me insane….. I pray every day that it will go away.  I have a constant shadow that stays around a 2 or 3 then goes up to a 5 then and then back down throughout the course of the days… and about twice a week or so I wake up to the Hot Poker straight thru the eye into the brain and its game on for an hour or two… I’m always tire, worn completely out, depressed and all round miserable… and so lately to top it off I’ve even heard it at work, there is always something wrong you, or you always have a headache, you’re such a hypochondriac…  I really thought I was until I found you all… I already Love You Guys!!!!!

;) Christi

Hi Christi,

I am wanting to share some of my experiences of Topamax with you... I have been on it for two years.  I am now on 75mg - the side effects increase with a higher dosage (and there are more side effects than this too - with the really high dosages for seizures hair loss is common.)  I don't want to scare ya - I have been dealing with the side effects for the last couple of years... I had some pretty bad migraines and it keeps them at bay.  I am told it can help the CH too... mine came through though.  I am 29 - my CH started 6 months ago.  This is something I posted about Topamax a few weeks ago... a side note - I can't stop the Topamax or my migraines come back with a vengeance.  Your body becomes used to the drug if it works to prevent as I understand it.? Not only do you have to taper down, but there is the chance that things are worse when stopping!   :P
--my post--
Hi,

I've been on Topiramate for two years now.  I started taking it for migraine prophylaxis.  For the first year I had extreme "tingling" in my limbs as well - my fingers and toes felt as if they were being pricked by several needles much of the time.  This was not a pleasant tingle, but a rather irritating and sometimes painful one.  I rubbed my hands often, and had to scratch my shoes together to help soothe the feet in them.  Sodas/ carbonated beverages did not taste carbonated - this is the only taste difference I noticed.  I had a dry mouth for a while.  These side affects went away in the first year.
The most difficult side effects were the cognitive ones.  I found myself unable to think of words often mid-sentence.  I would be talking about something I was quite knowledgeable about and know what I was about to say, then all of a sudden it was gone... Surely this had happened before, but it started happening on a regular basis on Topiramate (Topamax is the Brand name here - often referred to as Stupamax or dopamax.)  I cannot concentrate sometimes either - sometimes I feel disoriented.  These are all the worst symptoms of the drug that did not dissipate with time!   Sad

Good luck!  I'm now actively trying to get a different preventative - just started getting Clusters 6 mos ago.   Wink

Val  
-----

I want to wish you better luck with it for CH than I have!  ;)
But you are nowhere near alone in your experiences - all of these are very common!  I have done lots of reading...

Welcome to the site, you don't have to feel alone in this any more.  
Check out oxygen as a abortive - you'll find the link to the left.  NO Side effects and it's cheaper than the drugs that most docs offer right off the bat.   Read up before you next appointment!   ;D

Val  

Thanks so much Val.  I have noticed the tingles in my face more than anywhere else as of yet.  I do know that my Diet Dr. Pepper tastes flat all of the time and I now have the reason... I am naturally blonde and have never been the "dingy" type... so this new me and it is cracking my husband up.  

I am doing as much research as possible and Yes, I am going to ask about the O2, seem as if everyone here is using it with pretty good results.  
;D Christi

HI - I also was started out on Topomax due to misdiagnosis of Migraine, which I have never had.  I was told right off to forget about sodas because they would taste flat.  The Topomax did nothing at all for the headaches, but I would also get some numbness in my fingers and toes.  I was switched to Verapamil, which is more of a cluster medicine, but that didn't work for me, although I hear several people swear by it.  The best thing is OXYGEN, it stops it within a couple of minutes for me, or at least brings the intensity down enough to open my eyes.  I also had an Occipital Nerve Block recently (lidocaine injection), and that has helped a lot!  It didn't get rid of the headaches, but it has reduced them to between one - three a day, rather than the 4 to 6 that I was having.

Blondie wrote on Apr 29^th, 2009 at 11:45am:

about twice a week or so I wake up to the Hot Poker straight thru the eye into the brain and its game on for an hour or two… I’m always tire, worn completely out, depressed and all round miserable

Hi Christie,

This night time attack is one of the hardest for everyone on the site it can be a real head F*@k at times.Excuse the language but its the only way to describe it. Please do read the OXYGEN section to your left and this will give you all the information you need to bring to your doctor. This has been a very powerful abortive for many people on this site. Hang in there girl and welcome to the site... ;)


Lefty...!

Welcome home,


             We finally found you.!!!!!!!




                                                Coach Bill

                   

Thank You!!!!

Its nice to finally be found!  


;D Christi

I never tried topomax...but many have described it as dopey-max due to side effects some people encounter! ;)

Read the link on the left "oxygen info"...it's been a life saver for many. I can abort an attack in 6-8 minutes just huffing oxygen, but it must be used correctly or it's useless.

Welcome home, so glad you found us!

Joe

IN DEFENSE OF TOPAMAX -- I've been on it since 99 and it's been my MIRACLE prevent.... Don't think I'd be here without it. BUT here's the secret (forget what the directions say or the doc for that matter). TAKE THE WHOLE DOSE AT NIGHT BEFORE YOU GO TO BED!!!! You'll sleep most of the side effects off during the night

I've been on a dose of up to 400mg at times. Went for years at 300 and thank goodness now I'm down to 100mg, but I don't have all the side effects (or dopey feeling) that a lot of you complain about.

Food doesn't taste real great, but who doesn't need to drop a few pounds? I don't drink a lot of carbonated drinks, but they're not good for you anyhow (drink water or tea or coffee - they taste ok). Ice cream still tastes great. :)

Topamax has worked for SOME of us. Back a few years ago I quit it completely (don't even ask - I thought I was superwoman or something). did fine for a few months, then WHAM-- I had the mother of all high cycles... My doctor now has a signed statement that if I ever do that again he has permission to hit me over the head with a baseball bat!

If you get a little forgetful (heck, I'm OLD - I'm supposed to be forgetful) write post-it notes. But before you write it off - give it a chance.

Hugs BD :-*

Thanks Barbara, it makes me feel better knowing that Topamax has worked for someone for so long, it always takes me a few weeks to get use to a new medicine and all of the side effects, I hope I have as much luck with it as you have had.    I have just finished the Prednisone and so far I haven’t noticed any major change other than I haven’t taken any really big hits, which is a plus.  I seem to have Shadow’s all the time.  
And yes.. I am sooo forgetful on this so I have set a Blackberry reminder for 9:00pm nightly to take my med’s… I also have one set for my hormone pill in the morning too..  ;)
Any suggestions as to what will help with the all day shadowing?  I’m all ears….  

:D Christi

ive tried redbull but drinking that much made me feel sick so i binned that one although others say that it works for them. Mostly strong coffee, keep my self busy physically in work and when i get that strange feeling of some one playing a tune on my optic nerve i sing along with it (den den deen smoke on the water). cold bottles or towels on the side of my head and laugh my self silly at the stupidity of this crap but then again i never was normal lol

mark (shadowing like a palm tree in the desert but no hits since sunday)

Hi Chritsi :) I've been on 100mg of Topamax for over three years now.

Like Barbara D I take it at night and don't seem to feel any side effects the following day.

In time you will find out what works best for you.

All the best in your quest,and to PFD
Iddy :)

I also take all of my Topamax at night.  I still get the cognitive side effect.  This doesn't mean in any way that I think the side effects outweigh the usefulness of the drug.  I love the fact that my migraines are much less frequent due to it!!   :)  I simply wanted to put it out there that these side effects are what I (and many others have) felt in the first months of taking Topamax.  I could truly care less that I couldn't taste carbonation (ok - a flat beer was a bit annoying at first haha this was before CH and my migraines weren't triggered by alcohol)... Little annoyances were most of what I explained - Christi was asking for side effect info and I thought I'd give her some.  I love the fact that Topamax helps me!!  And I know it helps several here!

As I said, I truly hope it works for your CH!!! I wish it worked for mine.   ::)  Give it an honest try/ a chance if it was prescribed, as with most of these drugs, it takes time and dosage changes to determine usefulness.   ;D

Val

Christi - Get on O2 - read the info on the left.... It will probably get rid of the shadows - does mine. I LOVE my O2... my bestest buddy and pal. You might try that to get rid of those nasty shadows. Works for most of us.

Hugs BD :-*